The youngster has been in hospital three times since returning from a five-month stint in the Netherlands last week, where his symptoms ‘miraculously’ improved after his parents paid for specialist cannabis-oil treatment.
Star Trek star Sir Patrick Stewart is supporting a campaign for Alfie Dingley, six, to be given medical cannabis to treat his epilepsy.
Alfie, from Kenilworth in Warwickshire, suffers from a rare form of the condition, known as PCDH19, which causes him to suffer up to 150 life-threatening seizures a month.
Sir Patrick, who uses medicinal cannabis to treat his arthritis while living in California, said: ‘How could one not support Alfie?
‘Hearing what his life has been and the benefits given to him by being able to use medicinal marijuana, there has never been a stronger case for the legalisation of medical marijuana.’
Following Alfie’s hospitalisation, his mother Hannah Deacon, a hairdresser, appealed directly to the Home Office and Prime Minister Theresa May to ‘act to help my beloved son survive and have the best life he can’.
Ms Decon and Alfie’s father Drew Dingley handed the 370,000-strong petition, which is also backed by Joanna Lumley and Richard Branson, supporting the use of the banned substance, to Number 10 Downing Street today.
Cannabis oil is illegal in the UK, despite being available for medical purposes throughout Europe. The Home Office previously said it would consider a medical cannabis trial as an option for Alfie, who will likely would be institutionalised with psychosis and die prematurely without appropriate treatment.
Sir Patrick Stewart (pictured with Alfie’s parents Drew Dingley and Hannah Deacon) is supporting the campaign for Alfie Dingley, six, to be given cannabis to treat his epilepsy
They gave a 370,000-strong petition supporting the drugs’ use to Number 10 Downing Street
Alfie Dingley, six, has a rare epilepsy, which causes him to suffer up to 150 seizures a month
Sir Patrick uses cannabis to help treat his arthritis while living in California and says ‘there has never been a stronger case for legalisation’ than Alfie (pictured with his father Drew Dingley)
Alfie will likely would be institutionalised with psychosis and die prematurely without therapy
‘We just want our little boy back’
Speaking of his condition, Sir Patrick said: ‘I have been registered for medical marijuana in California for over three years and have found it immensely beneficial for my arthritis.
‘I had to have eight steroid injections in my fingers and knuckles, which was about as painful as anything one could imagine, because medicinal cannabis is not available here.’
Speaking of his son’s disorder, Mr Dingley said: ‘Alfie’s condition is worsening, which is obviously a worry.
‘The steroids have side effects, they make people more aggressive and we’ve seen a change in his behaviour.
‘We just want our little boy back, our happy little six-year-old playing with his sister.
‘This is our six-year-old son, we’re not going to put something into him that’s in any way illegal.
‘What we’re asking for is a medical-grade product, made under laboratory conditions, which is bottled and prescribed in the way any painkiller is.
‘It’s amazing the support we’ve had, Richard Branson came out of the blue and all the support has been amazing from people. Hopefully things are starting to move in the right direction.’
Ms Deacon added: ‘Alfie is really struggling and really suffering.
‘The longer this goes on the longer he will suffer and it has to stop.’
‘It’s really important that the Government understands the importance of feeling in the public domain, we have a lot of public support.
‘We’re hoping to get some reassurance and clarity on what the Government will do to help us.’
Sir Patrick felt compelled to help Alfie after hearing how cannabis changed his symptoms
As well as Sir Patrick, Joanna Lumley and Richard Branson also back the campaign
Alfie’s parents Hannah Decon and Drew Dingley (pictured with their son and three-year-old daughter Annie Dingley) will hand the 380,000-strong petition supporting the use of the banned substance, to Number 10 Downing Street today
‘Beloved’ boy Alfie Dingley has been rushed back to hospital for emergency treatment
‘Please don’t stand by and let my son die’
This comes after Alfie was admitted to hospital earlier this month after suffering a cluster of seizures, and being given intravenous steroids, to the distress of his family, who describe him as a ‘beloved son’.
It was the second time he had been hospitalised since returning from the Netherlands.
On a Facebook page set up to highlight his plight, ‘Alfie’s Hope’, Ms Deacon said: ‘To see him in distress in hospital with his life in danger yet again is traumatic and heartbreaking. My son is suffering.
‘We need your urgent compassion and action now. Please don’t stand by and let my son suffer or die unnecessarily.’
Ms Deacon added the medical cannabis products were the ‘only ones which have worked’ to reduce Alfie’s seizures in number, duration and severity.
‘It’s clear his life is being put at risk by this ridiculous mess that is happening at the moment. I can’t bear to watch my son have seizures. It’s heartbreaking,’ she said in an emotional video.
Alfie Dingley’s mother, Hannah Deacon, has repeatedly urged the Government to grant the youngster a licence to use cannabis oil to soothe his symptoms
Home office are considering a cannabis trial
Ms Deacon has repeatedly urged the Government to grant Alife a licence to use cannabis oil to soothe his symptoms.
It previously denied his mother’s plea, warning the banned substance ‘cannot be prescribed, administered or supplied to the public’.
Yet the Home Office recently revealed ministers are exploring ‘every option’ for treating Alfie, including putting him on a medical cannabis trial.
If Ms Deacon were to give Alfie – the only boy in Britain to have PCDH19 – medical cannabis in the UK, she could be jailed for up to 14 years.
While Policing Minister Nick Hurd has met with the family to discuss possible treatments, it has been stressed no decisions have been made.
A Home Office spokesman said: ‘The Government has a huge amount of sympathy for the rare and difficult situation that Alfie and his family are faced with.
‘The Policing Minister wants to explore every option and has met with Alfie’s family to discuss treatments that may be accessible for him.
‘No decisions have been made and any proposal would need to be led by senior clinicians using sufficient and rigorous evidence.’
Mr Hurd previously told MPs that he ‘sympathised deeply’ on a personal level with the situation faced by the family.
Speaking in the Commons, he added: ‘We are aware that the position is shifting in other countries, we monitor that closely.
‘We are also aware that cannabis is an extremely complex substance and the WHO quite rightly are looking at it from every angle.’
It follows the landmark case of Billy Caldwell, an epileptic boy in Castlederg, Northern Ireland, who was prescribed cannabis oil on the NHS last April.
Although Alfie has been successfully treated in the Netherlands with cannabis oil, he cannot be given the drug in Britain.
Members of the all-party parliamentary group on drug policy reform had called on the Home Office to assist with Alfie’s plight, saying it would reduce his seizures and hospital visits brought on by his condition.
His family who spent five months in Den Haag, said the medication, prescribed by a paediatric neurologist, reduced his seizures in number, duration and severity
WHAT IS CANNABIS OIL AND IS IT LEGAL IN THE UK?
Government advisers made it legal to buy cannabis oil in 2016
Government advisers made it legal to buy cannabidiol (CBD) oil in 2016 after they admitted that it has a ‘restoring, correcting or modifying’ effect on humans.
However, the oil’s legal status has confused thousands across England and Wales, after the MHRA back-tracked on its position just weeks after.
Suppliers now have to obtain a licence to sell it as a medicine, following the decision in October two years ago – but some weave the strict rules.
Manufacturers are able to avoid regulation by selling it as a food supplement – ignoring the lengthy process of gaining a medicinal licence.
CBD oil, which can reportedly help with back pain, anxiety and epilepsy, has yet to be approved for use on the NHS in Scotland.
It comes in many forms, the most popular being an oil – which users spray under their tongue – or gel tablets which melt slowly in the mouth.
However, cannabis oil – which contains THC, the compound that produces the ‘high, is illegal under UK laws.
But Billy Caldwell, from Castlederg, Northern Ireland, made headlines last April when he became the first Briton to be prescribed it on the NHS.
Cannabis oil, which reportedly has no side effects, influences the release and uptake of ‘feel good’ chemicals such as dopamine and serotonin.
‘Miraculous’ results with cannabis treatment
Alfie’s first attack happened when he was just eight months old. By the age of four he was having seizures every three weeks.
Doctors discovered he was just one of just five boys in the world in the world to have PCDH19, which is caused by a genetic mutation.
By 2016 Alfie’s seizure frequency increased to almost every week, with multiple episodes each time.
In despair Ms Decon sought out other treatments and learned about cannabis oil, which contains THC, the compound that causes a ‘high’.
It is different to CBD oil which is legal because it does not contain THC.
Ms Deacon found a doctor in Holland willing to prescribe it, so moved there with Alfie last September.
The results were, she previously said, ‘nothing short of a miracle’, bringing his seizures down to about one a month. The Dutch doctor said the outcome was ‘astounding’.
Yet since Alfie and his mother returned to Britain in January after running out of money, he has been unable to continue the treatment.
Baroness Meacher, chair of the All-Party Parliamentary Group for Drugs Reform, previously said it was ‘scandalous’ that Alfie couldn’t be given cannabis oil in Britain.
And Tory MP Crispin Blunt, who advocates for the legalisation of cannabis, added: ‘This position must be reviewed in the UK urgently.’
Yet The Home Office said last month it would not issue a licence for the personal consumption of a ‘Schedule 1 drug’ such as cannabis.
THE LANDMARK CASE OF BILLY CALDWELL
An 11-year-old on the brink of death from a severe form of epilepsy has made an ‘incredible’ recovery since taking medical marijuana.
Billy Caldwell, from Castlederg, Northern Ireland, made headlines in April when he became the first Briton to be prescribed such a drug on the NHS.
But his treatment actually began last November, when he was given cannabis oil by specialists in the US in hope it would control his vicious seizures.
And now, 10 months since he was first given the liquid cannabis oil, he hasn’t had any seizures. He used to suffer up to 100 a day.
Born with intractable epilepsy and learning disabilities, Billy has since cheated death thousands of times, his mother said.
Charlotte told Derry Now: ‘Following extensive treatment with CBD oil, Billy is now more than 300 days seizure free.’
The 49-year-old, who is her son’s full-time carer, also told ITV News earlier this year the change has been ‘incredible, because one seizure can kill him’.
Ms Deacon, 38, from Kenilworth in Warwickshire, said: ‘We are hoping that this is the beginning of the end of our long fight to save our son’